Congenital Heart Futures Act

Thanks to the efforts of many CHF Advocacy Volunteers, and the National Congenital Heart Coalition, we are thrilled that the “Patient Protection and Affordable Care Act,” enacted in March 2010, includes provisions of the Congenital Heart Futures Act calling for:

Increased Research: The Congenital Heart Futures Act urges the National Heart, Lung and Blood Institute to conduct or support research on diagnosis, treatment, prevention and long-term outcomes in congenital heart disease which addresses the needs of infants, children, teens, adults and the elderly living with congenital heart disorders.

Increased Surveillance: The Congenital Heart Futures Act asks the CDC to create the National Congenital Heart Surveillance System, which will provide nationally representative population based epidemiological and longitudinal data on infants, children, and adults with congenital heart disease in order to better understand CHD incidence, prevalence, and disease burden and assess the public health impact of CHD.

The Children’s Heart Foundation has been a key player in the successful passage of the first ever congenital heart disease specific legislation. Working closely with the member organizations of the National Congenital Heart Coalition, CHF participated in the drafting of the legislation and the sponsorship of the National Congenital Heart Lobby Day in 2009, to recruit legislative support for the bill. The bill subsequently became law one year later, in March of 2010.

The CHF is very grateful to Senator Richard Durbin (IL), Senator Thad Cochran (MS), Congressman Zack Space (OH) and Congressman Gus Bilirakis (FL) who each elected to be lead sponsors of the legislation.

In April 2010, the Children’s Heart Foundation joined forces with the Adult Congenital Heart Association and Mended Little Hearts to host National Congenital Heart Lobby Day 2010. Participants advocated for increased funding for life-long research and improved CHD Surveillance to over 130 legislators. The response was overwhelming. Our advocates reported that over 80% of the legislators visited expressed their support for congenital heart defect surveillance and research.

What you can do now ...

As the Congenital Heart Futures Act was passed into law, we are now faced with a new beginning. Every year we will need to lobby for funding in the budget. We will need to continue to speak up loudly about why CHD research and surveillance should be a top national priority.

You can do this in three easy ways:

Write your legislators

Call their office today

Visit your legislators

WRITE YOUR LEGISLATORS: Urge your Senators and Representatives to contact the Chairpersons of the Health and Human Services Appropriations Subcommittee to ensure that they include funds in the Fiscal Year 2011 Labor, Health and Human Services Appropriations bill to fund the congenital heart disease surveillance system at the Centers for Disease Control and Prevention.

Ask to speak to the Legislative Staff who deals with Health Issues. You may already have this person's name and direct line from previous contacts.

Encourage your members office to contact either Chairman Obey or Ranking Member Tiahrt in the House or Chairman Harkin or Ranking Member Cochran in the Senate to urge them to include a total of $7.25 million for the Centers for Disease Control and Prevention (CDC) to support data collection to better understand CHD prevalence and to assess the public health impact of CHD, including $3.75 million for a pilot adult surveillance system and $3.5 million to add CHD into the existing birth defects surveillance system.

VISIT YOUR LEGISLATOR: The House and Senate are in recess in late July and August and return to their home districts. Plan to visit your in-district office during this time. Register today to participate in CHD Advocates in Action In-District Visits:

Receive assistance in scheduling your visit

Coordinate your visit with other advocates

Receive educational and support materials such as leave behind and fact sheets

To register for Summer In-district Lobby visits, or to join as a CHF Advocacy Volunteer, please complete the registration form:

Your story and your connection with congenital heart defects, is the most powerful tool you have for moving legislators into action. Many voices with one united message have already proven to make a significant difference. It is our job to ask congress to provide the funds to turn their promises into actions. Only then will we see the far reaching benefits of the Congenital Heart Futures Act.

Thank you for joining us as we ask our legislators to improve and prolong the lives of congenital heart patients by increasing CHD research and health surveillance.